Addictions in people with intellectual and developmental disabilities higher than expected, study shows

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TORONTO, September 8, 2016 – A new CAMH study shows that people with intellectual and developmental disabilities (IDD) have nearly double the rate of a doctor-diagnosed addiction over a two-year period, compared to those without these disabilities. The addiction rates were 6.4 per cent versus 3.5 per cent respectively, according to research by the Health Care Access Research and Developmental Disabilities (H-CARDD) program.

The study, published this month in BMJ Open and released on the heels of the Ontario Ombudsman’s report on services to this population – supports growing anecdotal reports from clinicians that addiction in this population is a concern.

“Generally, there have been reported low rates of addiction in this population, but we wanted to take a closer look,” said lead author Dr. Elizabeth Lin, Scientist in Performance Measurement & Evaluation Research with the Provincial System Support Program at CAMH.

Because information on people with IDD is not captured in a single database, it has been difficult to identify them to monitor their health and other outcomes. To address this issue, the researchers worked with the Institute for Clinical Evaluative Sciences (ICES) and linked Ontario data from multiple sources to create a cohort of over 66,000 adults with IDD under age 65.

At 6.4 per cent, the prevalence of addiction among adults with IDD is higher than previously reported. However, it’s also important to note that this study does not capture people who have not been diagnosed with addiction by a physician, which means they may not show up in these health records, the researchers point out.

Because addiction hasn’t necessarily been on the radar, it may not be well-recognized by those providing care for people with IDD. At the same time, addiction service providers may not recognize individuals with IDD and their treatment needs.

“Toronto needs more addiction supports for individuals with developmental disabilities,” said Frances MacNeil, Regional Executive Director at Community Living Toronto. “Agencies like ours, partnering with addiction services to provide the right kind of training and supports, is an important step.”

The study also shows that nearly 79 per cent of people with IDD and addictive disorders have co-occurring psychiatric illnesses. The high rates of mental health problems, overall morbidity and socioeconomic factors like poverty make care coordination and training all the more important.

“This population carries multiple chronic health conditions and is at risk of poor outcomes without adequate comprehensive support and care coordination. Yet few services have expertise to tend to this population’s needs,” said Dr. Vicky Stergiopoulos, CAMH’s Physician-in-Chief.

By revealing the prevalence of addiction disorders in an already complex population, the study findings emphasizes the need for continued research in this area in order to improve care for people with addiction and IDD, Dr. Lin said.

“The crisis described in the Ombudsman’s report is more than a crisis within social services,” said Yona Lunsky, H-CARDD Director. “It is as much a mental health crisis for those with developmental disabilities, and for those who care for them. We need to keep focused on the health supports that people with IDD require.”

Specifically, Dr. Lunsky noted the importance of continuing to educate and raise awareness of these issues both within the health and the developmental disabilities sector, the need for adapted screening tools for addictions to use with their patients with IDD, and easy-to-use information to help adults with IDD navigate the addictions system.

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The Centre for Addiction and Mental Health (CAMH) is Canada's largest mental health and addiction teaching hospital and a world leading research centre in this field. CAMH combines clinical care, research, education, policy development and health promotion to help transform the lives of people affected by mental illness and addiction. CAMH is fully affiliated with the University of Toronto, and is a Pan American Health Organization/World Health Organization Collaborating Centre. For more information, please visit camh.ca or follow @CAMHnews on Twitter.